add up to something big

Autism: It’s not a disease

Most people are familiar with this story to some degree. In 1998, a surgeon and medical researcher called Andrew Wakefield published a research paper claiming to have discovered a concrete link between the combined measles, mumps and rubella vaccine (MMR) and the development of autism. Because autism tends to show itself around the same age that the MMR vaccine is administered to young children, this made intuitive sense to a lot of people and sensationalist stories spread like wildfire.

No other experts succeeded in replicating these findings. In fact, there was no sound scientific basis at all behind the original claims. We already knew that autism is developmental and is likely to have some genetic basis. Even Wakefield himself eventually admitted that he falsified his data and that his claims were nonsense. He was struck off the medical register and is no longer allowed to practise.

Yet somehow, the myth has persisted even though its very originator has debunked it along with a lot of more conscientious and reliable sources. Influential people (like Donald Trump, who recently tweeted about a “healthy” child who “doesn’t feel good and changes” in reference to the child somehow apparently acquiring autism after receiving a vaccine) persist in spreading and perpetuating these false claims for reasons that clearly have no relationship with reality. The damage they are causing and have caused is grave.

In the USA last year, measles cases reached a 20-year high because parents were refusing to have their children vaccinated. The disease had been declared eliminated there in 2000, yet in 2014 there were 288 cases reported between 1 January and 23 May alone.

Measles can kill. That’s why we have a vaccination. But the decrease in vaccination means that communities are losing their herd immunity, a group resistance to a disease brought about by immunity in the majority of the population. Previously, this has worked well to protect babies who are too young to be vaccinated but are especially vulnerable due to their undeveloped immune systems, and those who are unable to have the vaccination for various reasons. Now, those babies and children are potentially dying of measles because of irresponsible and ignorant parents refusing to have their children vaccinated. Remember this is all based on an entirely groundless, falsified claim backed up by fraudulent data.

The justification for all of this is supposedly to protect children and families from autism. It is very difficult to understand how parents could possibly prefer to take the risk of having a dead or gravely ill child (and putting other babies and children at risk of serious illness or death) over that of having an autistic child. Why would they do this? Autism is not a disease and cannot possibly be fatal. So what’s the big deal? What’s so terrible about autism that it’s a worse prospect than death?

When the MMR/autism story first broke, general knowledge of autism was low. Most people didn’t really understand what it was, unless they knew someone who was autistic or had an autistic family member. The media swooped in quickly to fill this gap, sadly doing so with toxic and exaggerated information because that’s what sells. They told stories of how families’ lives had been ruined by autism and generally painted a picture of autism as some terrible monster that turned children (always children) into aloof, mysterious creatures who were incapable of loving, observing basic social rules or communicating with their families or indeed anyone. Autism, they told us, equals heartbreak and broken families; an autistic child will remain forever locked inside himself and inaccessible to his loved ones and faces a bleak and lonely future with no independence or fulfilment. That’s what people were told, so in the absence of other information, that’s what they believed. Families grieved the “loss” of this person locked inside himself or herself, not realising that the autistic person they saw was in fact a whole person in himself or herself and there was no “other child” hiding inside.

The result is that autistic people are to this day stigmatised, misunderstood and marginalised. That’s why I use the term “autistic people” rather than “people with autism.” The latter may abide by “people first” principles (usually a good thing but not always) – in other words, we are people first and autism is a secondary characteristic – but “with autism” implies that it’s something you can have or acquire, like an illness. In fact, it’s just a word to describe someone whose brain works in a certain way, like a personality type. You wouldn’t say “people with tallness” or “people with extraversion” but you WOULD say “people with measles” or “people with ‘flu.”

(Side note: I have also stopped using the word “neurotypical” or NT, which a lot of people use to describe all people who aren’t autistic. I think that term is misleading. It implies that all non-autistic people are more similar to one another than they are to people who are autistic, as if there were a sharp divide. If you took away all autistic people from the world, could you then say that everyone left was “typical,” a homogeneous group whose minds worked in the same ways? Of course not. Lots of people stand out within various groups without being autistic. People with dementia or severe schizophrenia or Parkinson’s disease could hardly be called neurotypical, for example. The word essentially implies that there are two types of people: autistic people and normal people. That doesn’t help the cause.

“Autistic” itself is misleading enough, with its implication that autistic people are autonomous, alone, not able to relate to others; using “neurotypical” deepens that perceived divide. A newer term I have recently come across is allistic. That simply means “not autistic.” The term was created by autistic people and is becoming more widespread. I prefer to use that.)

Let me share a very personal story now. I was diagnosed with Asperger’s syndrome at the relatively late age of 26. The lateness may have been partly because any autistic traits I had as a child were overshadowed by those of my brother, who is more “typically autistic” than I am and also has a learning disability so it is far more obvious in him and probably made me look a lot “less autistic” in comparison. I had sought a diagnosis because I’d felt out of step with my environment and other people all my life. I was a very unhappy child who yearned to be an adult so I wouldn’t have to worry about standing out in the playground and being bullied because I didn’t know how to relate to other children. In secondary school, I dreaded going in every day because I couldn’t work out what was stopping me doing my homework despite really wanting to do well and I was always being shouted at and humiliated by the teachers for it, although I performed consistently well in classrooms and exams. As a young adult, I was miserable because I couldn’t work out why my romantic relationships kept failing and I wished I were older so people wouldn’t patronise and talk down to me so much. Now in my thirties I am happier and more comfortable than I’ve ever been before and looking forward to the future in a more positive way. That is partly down to that diagnosis giving me an opportunity not only to understand myself better but also to enter a community of people who had experienced similar struggles to myself. I’m not necessarily advocating diagnosis, which can cause a lot of problems under some circumstances. You are who you are, with or without one, and the choice to seek one or not is entirely personal. It was a good thing for me, but not for everyone. Some people feel that labels will hold them back, and that’s a valid opinion for those people. Others don’t have a choice, because they’re children or severely disabled because of their autism or have an accompanying learning disability. Those people don’t get to make the choices and changes I discuss in this post, but they still suffer from the attitudes – much worse so, in fact. I’ll be looking at disability another time.

For me, the most powerful thing about the diagnosis was that I had it, it was mine and I didn’t have to share it with anyone. It was validating: it told me “it’s OK to be you after all, despite the messages you have been getting all your life. It’s OK because there are reasons for you being different.” I used my diagnosis as a lever to catalyse my personal journey. I used it to become more self-aware, to recognise when I was doing things that bothered other people and when I was damaging my own relationships. My ability to maintain romantic relationships was transformed completely. Before that, I’d had hardly any that lasted more than a few months and only one that had made it to a year. For a 26-year-old who wanted to be in a relationship, that wasn’t a great track record and didn’t help my self-esteem when so many of my peers were moving in with their partners and getting married. But then my first relationship after the diagnosis lasted a year and a half. My next proper one, which wasn’t long afterwards, was with the person I would marry four years later and start a family with. The diagnosis allowed me to really examine what was going on with who I was and to make positive changes to my life. I didn’t need a romantic relationship. I needed a better relationship with myself.

One change I made was about the way I saw myself. Previously, I had worked and worked for many years to fit in, to appear as much like everyone else as possible. I worked so hard to suppress my true self and learn “normal” habits that now people are often quite surprised to learn I’m autistic. I wanted to reclaim the place in society that they had told me all my life wasn’t rightfully mine, because I was different. I learned social rules by rote, where other people seemed to absorb them by osmosis. I read self-help books about relationships and communication. I figured out ways of doing everyday tasks that gave me the same results other people got. I took responsibility for my own life, rather than blaming others for making things hard for me or saying “this is just the way I am and it isn’t fair: look at how much I struggle! Life is SO HARD and there’s nothing I can do about it!” How disempowering those attitudes can be. I know, because I often used to feel that way.

Years ago, I felt that my diagnosis somehow validated me, gave me an explanation for being “different” and allowed me to show others that I wasn’t a weirdo, I was just autistic. Now I know that I don’t need to make excuses for who I am. The diagnosis gradually helped me realise that I don’t need to change to make myself look more like other people. I can “fit in” without sacrificing my own identity to look the same as everyone else.

Autism is part of my personality and part of my identity. Our personalities aren’t something to hide and be ashamed of, despite what the world may have been telling you all your life. We are all who we are, and that is something to be proud of, especially if we work hard to be good people as much as we can. I am gradually reclaiming my autistic identity, behaving in less and less artificial ways to disguise my differences. I don’t have to pretend I’m happy in a crowded bar with loud music that literally hurts my brain with the sensory overload. I don’t have to suffer for appearances’ sake: it is OK for me to make as much of an effort as I can and then say “I’m struggling to cope with the atmosphere in here so I’m afraid I will have to call it a night.” I don’t have to make a phone call (something I really don’t cope well with) when the intended recipient is happy to receive an email or text, just because other people would make phone calls in the same situation. And I don’t have to make eye contact with strangers or even friends, something that feels as uncomfortable and unnatural to me as a prolonged electric shock.

Granted, there is a balance to be struck between saying “this is who I am, and I am proud” and “this is who I am, so screw you and your needs!” I have known people who use their autistic identity less constructively. One person I know has a habit of saying “It’s not my fault: I’ve got [Asperger’s] syndrome” to dismiss anyone who calls them out for behaving in a self-centred or hurtful way. Obviously it’s damaging to people who are being hurt by that sort of behaviour, but arguably it’s more damaging to that person if they are seeing their autism as something that makes them behave in ways they can’t (and therefore needn’t try to) control, rather than taking these opportunities to learn and grow. And it really can’t be helping the general public’s perception of autism.

(Ironically, that person actually fell below threshold on a diagnostic test they took, meaning they are not “officially” autistic at all. But I think it’s perfectly OK to identify as autistic if that makes sense to you and fits in with your reality. It’s just not OK to use it as an excuse for your behaviour without acknowledging your own responsibility for said behaviour and for learning when you need to learn.)

Either way, our identities are really nothing to be ashamed of. It’s a bit insulting to be told implicitly by parents who refuse to vaccinate their children that they would rather have a dead child than one like you. And largely thanks to the media, we have to spend a lot of time correcting misconceptions and dealing with people who think autism is some horrible nasty evil thing that wrecks lives. Yes, someone who is disabled as well as autistic (and their families) will experience different struggles and of course this is what anti-vaxxers are scared of. But the anti-autism attitude does us all a disservice.

Lots and lots of people have responded to me telling them I’m autistic like this: “Surely not! You don’t seem that way at all!” And then, in a congratulatory tone, comes: “You hide it really well!”

Hide? Well? Um, thanks a lot for that.

How about recognising that autistic people don’t all look the same and might not meet your preconceived notions of what they should be like? And that it isn’t something we should be hiding, or feel that we should hide because of other people? How about considering the implications of praising someone for apparently hiding who they really are, because you believe that who they really are isn’t a good thing? That is not a compliment, no matter whether or not you mean it as one. And your intentions are all very well, but when you’re reinforcing a message someone has been receiving all their life that they are inferior and there’s something “wrong” with them that shouldn’t be spoken about, then the impact of your words is far, far more important than your intentions. If you say that to me, then what are you saying about my brother, who definitely “comes across” as autistic (according to the stereotypes) and couldn’t change that if he wanted to?

I was once out for a drink with a colleague I didn’t know well: we happened to be the last two left after a staff get-together. Somehow, it came up in conversation that I was autistic.

Well, thanks for telling me I’m wrong about who I am, Ms Colleague. Perhaps one answer to her question might have been “my diagnosis,” but I felt it was far more important that it was how I identified, part of who I was.

“No, but what makes you actually think you are autistic?” she persisted, as if my identity was simply not good enough for her.

I carried on trying to explain, trying to justify who I was to her, and she kept on interrupting to ask questions about why I “thought” I was autistic. In the end, I decided to simplify things by picking out some characteristics that people tend to associate with autism and give examples of how I displayed them. This made me EXTREMELY uncomfortable, but I just wanted to make her judgements of who I “really” was stop.

It didn’t work. My colleague listened to my examples and shot each one down in turn. “No, that doesn’t make you autistic. I do that. Lots of people are like that. Everyone has some degree of that. Why does that make you think you’re autistic? That’s normal.”

She wouldn’t stop, even when I realised I wasn’t going to be able to break through her prejudice and told her I no longer wished to discuss something that was a very personal subject for me, and wasn’t comfortable with my identity being dissected. She carried on regardless, until I was actually in tears and refusing to answer her because I was no longer able to cope with the interrogation.

Looking back, I could have asked her why she “thought” she was a Christian and argued that “Christians don’t do” certain things she did or that I, an atheist, did some things she did too and therefore she wasn’t a Christian. But I don’t think it’s constructive to fight ignorance with belligerence, so I’m glad I didn’t.

I think that’s quite an extreme example of the prejudiced responses we often get for sharing that we identify as autistic. A lot of it is simply because of how autism is portrayed in the media. So how should you respond when someone tells you they are autistic?

DO accept and believe what they are saying (or what those close to them are saying if they are not able to tell you themselves). No matter what you might think, you don’t know who they are better than they or their families do. Also, saying “no you’re not” is not a compliment, as if they’ve said “I’m so ugly!” and you’ve denied it to make them feel better. “Autistic” is not an insult or a matter of personal taste.

DON’T assume that the person (or their family) is saying they are autistic because they think they are “special” and want to be different. Autism has such a stigma attached to it that I’ve never known anyone to say they’re autistic when they’re not. That doesn’t mean nobody ever has or will, but starting out by assuming someone is lying is a bad idea. Try to keep an open mind. Oh, and I don’t mean people who giggle and say “sorry, I’m a bit autistic” when they actually mean “I’m a bit socially awkward” or “I’m a bit of a geek.” Those people need to stop.

DO try to understand where an autistic person is coming from if they don’t seem to realise they are being insensitive or hurtful. You can call people out – GENTLY – for using their autism as an excuse for bad behaviour that they can control BUT ONLY IF you know them and understand their autism well enough to understand what they can control and how much of it is just you getting offended because they don’t respond like an allistic person would. You are important too, but save this for people you have close relationships with. If they repeatedly disregard your feelings and shut you down with “it’s because I’m autistic” when you tell them so, gently explain that autism doesn’t stop them from listening and acknowledging that they have done something hurtful, whether or not they intended it. It is vitally important to do this tactfully, though. It might be that the person is very sorry and understands why they upset you and has already resolved not to do it again but is too embarrassed (because they are “different”) to be anything other than defensive. Calling them out might be, to them, highlighting the fact that they are “different” and can’t do social things as well as other people, in their view.

DON’T question someone about what makes them autistic or what “autistic things” they do. And for goodness’ sake, don’t ask if they have any “special talents.” That’s a stereotype and can be hurtful to us because most of us don’t have one and feel inadequate enough as it is in social situations. It can be hurtful to families who have struggled to bring up an autistic person in an allistic world and feel somehow inadequate as parents, even though they are almost certainly not. Tell them their son or daughter ought to have a talent they don’t have, and they will not be pleased. My brother has a remarkable ability to tell you the day of the week on which any date falls, but we didn’t discover he could do this until he was a young adult. Until then, we just knew he was great at spelling but couldn’t cope with basic maths or understand the value of money.

Remember it isn’t the autistic person’s job to educate you about what autism is. Unless it’s a question about how their autism has affected their experiences or other people’s treatment of them and you’re asking because you care about that person and don’t want to trigger any traumatic memories, then perhaps it would be better to Google your questions.

DON’T say “I’m sorry to hear that” or tell them they are good at hiding their autism. Autism is not a disease or something shameful. It’s hurtful to tell someone you’re sorry to hear about their personality or their relative’s personality, or that they’re good at hiding who they really are so they come across more acceptably in your eyes.

DO make the effort to find out what the person’s boundaries are, whether they can tell you themselves or you need to check with family and friends or observe to get the information you need. Autistic people often find certain situations unbearably overwhelming and may need the support of allistic people to navigate a world that isn’t set up to cater for autism. It’s hard to explain exactly how that intense discomfort feels, but it’s often an extreme fight-or-flight response that’s as urgent as when you can’t wait to get to the toilet, or (if you are very ticklish) someone won’t stop tickling you, or you have a really terrible itch that you can’t scratch – except by fleeing the situation. It’s more than just a dislike of a situation: it can be terrifying and traumatic.

The ways in which I experience these discomforts myself are quite common among autistic people:

I hate being touched, even if someone brushes past me, except by people I have grown to trust. That can be people I’ve known for a long time or not long at all and isn’t necessarily correlated with how much I like and respect them! I have friends I’ve liked and respected very much for several years but am still not comfortable with them touching me. I suspect that is because those people have never checked it’s OK in the first place and have just assumed it’s fine to greet me with hugs and kisses rather than gradually building up trust. If you know someone is autistic, it is best to either let them take the lead on initiating physical contact, or ask/offer it rather than forcing it on them (for example, by holding your hand out for them to take).

I’m very sensitive to sound and can get overwhelmed very quickly if more than one person is talking while I’m listening, or another conversation is happening across the one I’m having. Even if a television is on in the same room as someone talking to me, I find it difficult to pick out what they are saying. It’s probably for the same reason that I struggle to interpret what people are saying or formulate coherent sentences over the phone.

Similarly, too many visual inputs can be very overwhelming too. This is especially true when there are a lot of people moving in different directions and my brain is trying to process them all. If things are moving in predictable ways or in the same direction (like traffic) it’s fine, but people are very unpredictable! Crowded places are especially difficult because of the combination of visual, auditory and tactile stimuli and often I will just get myself out of the situation as quickly as possible. My least favourite places in the world are Liverpool Street Station and Piccadilly Circus. I know I am not alone among autistic people here!

Being the centre of attention, unless it’s entirely on my own terms, is something I’m really not OK with. I really hate situations where people gather round me and do “happy birthday” or “congratulations” routines even though that’s the polite thing to do. It could be that it’s because I know I’m expected to respond but have never really known how to. I found it horribly uncomfortable telling my family I was pregnant, because I knew I’d get a stronger response from them than from other people. (In the end, although it was VERY hard telling them, they have been fantastic about keeping their distance and not trying to get involved in my business.)

Everyone is different, but all of these are examples you might find in other autistic people, too. It’s not an illness, just one of many ways of experiencing the world. And it isn’t a disability unless the world contrives to make it one by expecting us to do things we are simply not equipped to do. Sadly, it does do this. But if we have to try so hard to change the way we think and do, then other people can surely do the same.